Monday, November 3, 2008

Is It Just ME?

Something that has come up over and over again during all my time with chronic illness is how to handle scheduling when your life isn't always predictable. I am finding it an issue once again, in the personal realm of things this time.

I try to be upfront with people about my illness. I find it makes it easier to find out right away if they can handle it or not, because frankly I have reached a point in life where I just don't have the time or energy to waste on those who can't understand. I recently moved (as I blogged about earlier this month) and so have come to meet some new people. I am still going through a lot of sickness at the moment, stuff in addition to my regular chronic illnesses. I am seeing an infectious disease doctor, I have CT scan scheduled for Wednesday and a procedure at the GYN this afternoon. On top of all of this, my mother has developed a re-occurrence of C. Diff, which she contracted in the hospital in late Aug./early Sept. We have a lot going on.

I met someone who had asked me to get together and I explained that the day in question was free at the moment, but that between not feeling well, and waiting to hear when tests (like todays GYN visit or the CAT scan) would happen, that might change. I felt I was being clear and honest. Last Thursday when I spoke to the GYN and found out I had to schedule this procedure today, I let my friend know that today wouldn't be a good time for getting together. This person went ahead and got tickets to a hockey game for tonight. I got a phone message yesterday to the effect that he hoped I would be able to make it since my doctor was at 4pm (which isn't the right time, but still. . .) and the game would start around 7pm and we could "catch some dinner before". Now I don't know about you, but I am not particularly fond of having a GYN procedure, hopping off the table and into rush hour traffic to go meet someone whom I don't know well, and then sitting through a hockey game. Another night I would love to do this. Had I not been clear when I told him that I had a doctor appointment scheduled for today I would feel guilty. Instead I feel angry and a bit manipulated.

It's a circumstance I've become too familiar with over the years. People hear what they want to hear, and then make you out to be the bad guy when things don't go as planned. It is disappointing enough to have to bow out of plans you would really like to keep, without the added guilt that goes along with this sort of behavior. I know the tickets weren't cheap. They also probably weren't easy to get on short notice. I just wish that instead of getting them and telling me about it after the fact, I had been consulted.

Do others find that even when they try to be open and honest about their health and the limits it puts on them, others seem to expect more than you can deliver? How do you handle this? I want to make new friends and keep myself open to new experiences, but I don't want to feel like a bad person when my body simply isn't cooperating. Any thoughts?


Leslie said...

Hi Maureen,
In response to your comment to me on Laurie's blog, I just wanted to follow up on that. Not only have things not changed since your experiences, my department is acting like I'm the only one this has ever happened to. I know there is some "squeamishness" because I got sick and diagnosed in the process of being in graduate school. I hadn't been dealing with this for years before grad school. And this isn't an acute illness that will force me to take time off, but then I will come back and be okay. So it's difficult for them to understand that I'm learning as I go how this will be impacting my life. So it's hard for all involved. But as you said, it's not that I am happy about what is happening to me. And it doesn't do me any good when other people make life difficult. And unfortunately, you too, are all too familiar with a situation like this.

Jeanne said...


This is just me speaking for myself and may or may not apply to you but here goes...

I have a tendency to volunteer too much info. So I have, in the past, volunteered details that end up backfiring on me (i.e. mentioning having a doctor's appointment the day in question when asked about getting together). Giving too much detail has often come back to haunt me.

While you were honest with this person and he clearly should NOT have purchased the tickets without consulting you unless he was 100% sure you were, in fact, available/interested... If a similar situation comes up in the future, you may want to try being vague such as, "I'm not available that day/night" or "I already have plans but thanks for asking".

I know you don't want to be "anti-social" but, as you pointed out, that's not really what's happening here. As you also mentioned, chronically ill patients are often forced to get more selective about who to makes plans with! If you plan things with "healthy people", I find it's important to educate them of the likelihood that tentative plans may fall through at the last minute. He may truly have "heard what he wanted to hear". He may have heard you loud & clear but bought tickets anyway hoping to guilt you into going once you knew the tickets had been purchased. Or he may just not "get it" that you are too sick to make plans like that (i.e. involving advance tickets). It may be a combination of the above. With some people, the type of honesty you outlined simply doesn't work! (Case in point... he bought the tickets and you wish he had consulted you)...

I'm certainly not suggesting being dishonest!

Sometimes, though, I have to:

1) Be vague about why I'm not available. I don't owe anyone any explanation...


2) Decide whether or not the relationship is causing more harm than good to my health. If I conclude that it's too draining or upsetting to keep explaining myself or find myself in uncomfortable/awkward situations, there are plenty of people I can be friends with who "get it" because they are chronically ill like me.

3) Sometimes I keep the relationship but minimize the amount of time I invest in it for the reasons outlined above.

It's all-but-impossible to tell if he was being manipulative of you... Your tone of voice when you mentioned you had a doctor's appointment that day, his apparent misunderstanding about your schedule, his not getting the fact that you can't just hop off the table at the doc, swoop in for dinner, and then go seat on hard seats to watch a game…. It’s hard to know for sure without hearing the actual conversation but it sounds like he either “didn’t get it” or “didn’t want to get it”. That’s a no-win situation for you…

It sounds like you may not have been that “into it” from the beginning but maybe didn’t want to hurt his feelings by just saying a clear-cut no? Maybe were afraid you'd offend him by declining? Or afraid he would not ask you to join him on future outings? If so (I may be wrong in my guesses), you may want in the future to “just say no" to events that may worsen pain, events that fall when you are so overwhelmed, or events on days when you probably know going in that the doctor's appointment alone is pretty stressful and/or painful!

I'm not being critical of how you handled it at all. You answered honestly and thought he'd understand. Clearly he either didn't get your message clearly or chose to ignore it because he really wanted you to join him.

If he bought tickets without your consent, you have no obligation to reimburse him or feel guilty if he tries to "treat you" to the ticket. He could have checked with you first or taken someone else!

His intentions may have been good but he either doesn't get how sick you are or doesn't know how to handle it/deal with it.


Anonymous said...

Hey Maureen,
I found your blog through How to Cope With Pain's blog and I'm glad I did. I've found that our 'circle' of blogs on chronic illness is getting larger and larger, and that is sad (in the sense of not wanting ANYONE to have to go through what we do) and at the same time encouraging! I'm so glad people are out and helps to hear of common situations and emotions to know we're not alone. On a side note, another one, LOL-I haven't posted on my blog in weeks. I became very ill and couldn't bring myself to write. I didn't want to write about the pain I'm in, and then when I felt I could write, I was in too much pain...sigh. I'm ready to blog again but my computer is broken, I'm on borrowed time here :)
OK, back to your question, I'm a relatively new sickie, about 2 years and I have issues with some family members! (my friend of 10 years beat feet when i got really ill so I'm not into meeting any new peeps) I'm certain that certain people don't quite get that I'm really hurting when I'm on the couch shaking and doubled over and sweating, they want to know why I'm not taking them shopping (read teenager here) and it's so hard to stay level-headed when I'm hurting this bad and in the moment so to speak, so angry words usually get spoken in answer to "you promised"... I guess I'm a whole different ball of wax :) When I'm ready to make new friends I will be dealing with the issues you are facing each day. I have a hard time getting family to understand my need for flexibility, is it possible to have new friends understand or hang in there long enough to understand? I'm glad you didn't push yourself to go under pressure of guilt. I've done that many times and paid the price dearly with a harder and longer flare.
I'm done taking up space in your comment column. New computer tomorrow and I'd love to add your blog to my blogroll. I'm updating everything!
Take care and be well,

Renee said...

I find it is difficult to get people to understand what is really going on with us. In fact, I am not sure they totally can. But trusting and respecting your boundaries in another issue ~ this is not negotiable. And,yes, we don't have energy to spare for people who are not able to accept us with our limitations. People do hear what they want to hear...but I think their own perspectives or needs get in the way. There are probably as many answers as there are people we come in contact with. Basically, taking care of yourself is your first priority. Those who are willing to be flexible just the way you have to, will understand at least that much. They will see that it is not you but your illness that gets in the way.

Mojo said...

You can only do as much as you can do. I'd like to think that if you'd told me about your appointment I'd have just gotten tickets for a different night. Or at least asked if you thought you'd be up to going.

I might have gotten the tickets anyway if it was a game I was especially anxious to see, but if you couldn't go I'd have just gotten one of the guys to come with (which should be no problem because hey, how many guys are gonna pass up free hockey tickets??)

I told you offline that I dated a Lupus patient for a while, so I've had plans canceled or "modified" this way before -- plenty of times. But I never held it against her, and I tried to make sure she knew I didn't. (How successful I was at that is something you'd have to ask her.)

So... I'd like to propose that it's possible that your date decided to get the tickets to cover that possibility with the full expectation that you might not make it. I might have done the same thing.

Then again, I'm guessing you're talking about the Islanders so probably not!